One concern here stems from the rapid progress recently in ability to isolate identifiable genetic markers that correlate to specific health issues, and that potentially correlate to treatments specific to those issues. Identification of a particular genetic characteristic that aids in a more specific treatment seems like a very good idea, since it could greatly improve the specificity of treatments that could be used for treatment or management of the related health issue.

A concern is that, since generally you must allow a private insurer to access your treatment records and history, presence of a particular marker could be used by insurers to restrict or deny insurance coverage for the condition for which you sought treatment - and for any other conditions that they might believe to be associated with the same genetic characteristic. Even in the absence of an existing complaint, under existing laws/regulations, it is conceivable that private insurers might reject persons for whom specific "genetic background" is discovered, on the basis that it's a "pre-existing condition" which they generally are allowed to exclude from coverage.

Since in the US the majority of employer-provided (or recently, employer "assisted") policies are with private insurers, having a specific known genetic "defect"(?) that precludes you being insured by their insurance carrier would generally preclude one's being hired by the company, and in some cases could prevent continuing an existing employment.

This has begun to place some in the situation of "I could be better treated if I knew, but if I knew they'd know, and I'd lose my job and my insurance and I'd not be able to afford any treatment." In other words, treatment is not in the hands of the medical practitioner, it's controlled by business and politics.

There obviously is a need to balance the patient's right to appropriate treatment, and privacy regarding personal medical information, against the insurer's "right" to know what risks are incurred in writing a policy. Unfortunately we know which side in this balancing act has the better paid lobbyists.

Lest anyone think this is a "remote concern" for patients, forty years ago I was informed by one of my physicians that "what's on the lab order isn't what I want to test for but if I wrote what I want to know having it in your record might affect you if you change jobs." That was long before "genetic profiling" was possible. Results on that test were negative, but just that the physician wanted to know could have been a factor in my future insurability and employability.

John